Every night six-year-old Kaylan Gibson sleeps in a bed which his mum describes as “a death trap”.
In the space of a few months Kaylan, who has a range of medical conditions, including cerebral palsy, has suffered a burst lip and narrowly avoided becoming stuck in his fully-adjustable adult hi-low bed, as well as falling out of it. Fearing for her son’s safety, Kayley Thompson feels she has been left with no choice but to share Kaylan’s single bed as it’s the only way to keep her little boy safe at night.
The family claim they were told by an occupational therapist that looked promising for Kaylan to receive a new specially designed Oasis cot bed, with high, padded sides to prevent him from injuring himself at night. But now Kayley and dad Jordan Gibson’s hopes have now been shattered after a meeting with social workers concluded that their son will not be provided with the bed.
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Kayley, from Pelton, County Durham, said: “I feel betrayed. Disappointed and betrayed. I literally cried throughout the whole meeting but the response I got was ‘Do you not think you’re just sleep deprived? I think you need to get a good night’s sleep.’
“How can I do that? When you share a bed with a child who has so many needs you’re scared to go to sleep in case you hurt him.”
Kaylan was born at 28 weeks premature with two grade four bleeds on the brain, which resulted in him having cerebral palsy. He is unable to walk or manage day to day tasks and also struggles with ADHD, as well as being diagnosed autistic and has sensory overload.
Kaylan also has Hydrocephalus – fluid on the brain – which has resulted in him needing to have a shunt to drain the excess fluid. And when Kaylan’s shunt got infected earlier this year he required brain surgery to have a new one fitted and Kayley has noticed Kaylan’s mobility has declined.
From the age of three, Kaylan had been sleeping in a safe space bed, which zipped up and Kayley says helped to keep Kaylan mentally and physically safe for sleeping. However, after leaving hospital in February following more surgeries to be fitted with a colostomy bag and PEG, Kaylan needed a hi-low profile bed, as well as a bed that would prevent him from falling or injuring himself.
Kayley, 25, said: “We were stuck and needed a bed ready for Kaylan coming out of hospital which resulted in an adult high profile bed which he has already banged his mouth, head and body off and caused him, and also us as parents , to be distressed and anxious due to not having a suitable bed.”
The mum-of-one added that the corners of Kaylan’s current bed are too sharp and when she raised this with the family’s occupational therapist she was told to “put bubble wrap around the bed”.
She added: “I just said ‘Can you be serious? This is a safety hazard for a child to suffocate’. She then tried to ring me and said that the only thing we could really do was to put bubble wrap around until we got a suitable bed for him, which is not acceptable at all from a ‘professional’ in charge of Kaylan’s needs.”
Kayley instead opted to put blankets around the corners of the bed to try and prevent Kaylan from hurting himself and has continued to sleep in the same bed as him, despite suffering from Fibromyalgia, a condition that causes widespread pain across the body and extreme tiredness.
Kayley claims she was told she would not be receiving an Oasis cot bed because the bed would be “enclosing Kaylan” and it’s “against County Durham rights”. However, Kayley and Jordan, 26, believe that this would be the perfect bed for Kaylan as due to his limited mobility and severely limited sight he is unable to get up if he fell out of bed.
Kayley said: “No one was there to back my corner and three of the professionals who were in the meeting hadn’t even seen the bed that we need for Kaylan so I couldn’t even try to sell it to them. I gave the occupational therapist a list of pros and cons to read out and she didn’t even read one of them out.
“Two of them in the meeting hadn’t even met Kaylan before either. They didn’t know what his mobility or his mental state was like and were just going off what other people have said.”
She added: “My heart sank. I thought we’re just going to have to get up and fight ourselves for this bed.”
Later that day Kayley and Jordan, who lives nearby and continuously helps with Kaylan’s care, set up an online fundraiser on JustGiving to try and raise £8,500 to get Kaylan a bed she believes he desperately needs and allow him to sleep safely in a bed on his own. Anyone wishing to donate towards a bed for Kaylan can do so via this link.
Sarah Burns, Head of integrated commissioning for Durham County Council and County Durham Clinical Commissioning Group, said: “We would like to apologise to Ms Thompson for any upset caused during the visit to her home and can assure her this was not the intention. We are very happy to speak with both her and colleagues to resolve this matter as quickly as possible in the best interests of Kaylan.”
A spokesperson for County Durham and Darlington NHS Foundation Trust said: “We are very sorry that Kaylan’s family is unhappy. Our multi-disciplinary team, which includes a pediatrician, occupational therapist, physiotherapist and social worker, works closely with families to ensure those in our care receive the safest and most appropriate equipment to meet their needs. We would welcome an opportunity to discuss the family’s concerns further and they can contact our patient experience team on 0800 783 5774.”